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  • Scott Adams
    Scott Adams

    Dr. Benjamin Lebwohl Opens Celiacs with Covid-19 Infection Registry to Study its Effects on Patients with Celiac Disease

    Reviewed and edited by a celiac disease expert.

    We encourage clinicians worldwide to report ALL cases of Covid-19 in their patients with celiac disease, regardless of severity (including asymptomatic patients detected through public health screening).

    Dr. Benjamin Lebwohl Opens Celiacs with Covid-19 Infection Registry to Study its Effects on Patients with Celiac Disease - Covid anxiety, you're welcome. Image: CC BY 2.0--POP'S PIC'S
    Caption: Covid anxiety, you're welcome. Image: CC BY 2.0--POP'S PIC'S

    Celiac.com 03/27/2020 - Benjamin Lebwohl, MD MS (Adult Gastroenterologist, Columbia University Irving Medical Center) has opened an online, confidential, de-identified secure registry for doctors worldwide to report cases of those with celiac disease who get Covid-19. 

    Note that this is a doctors only registry: "Registry entry should be done by health care practitioners only, not patients," and is designed to allow physicians to report such cases, so that patient outcomes can be tracked. 

    Celiac.com Sponsor (A12):
    The goal of the registry it to study whether those with celiac disease and Covid-19 infection will have different outcomes than those without CD.

    Below is his invitation to doctors worldwide to participate in the registry:

    Quote

    Dear Friends,

    Greetings from New York, where we are struggling but doing everything we can. 

    The web-based registry for patients with celiac disease and Covid-19 infection is now live. 

    This is a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry. We encourage clinicians worldwide to report ALL cases of Covid-19 in their patients with celiac disease, regardless of severity (including asymptomatic patients detected through public health screening).

    If you have a patient with celiac disease and Covid-19, please participate in the registry by going to www.covidceliac.org. The process should take approximately 5 minutes.

    • As of today, the registry is open to all countries but approval for submitting cases from the European Economic Area is pending further review. We hope to have clarification on this in a matter of days, as our goal is to gather information on patients around the globe.
    • Registry entry should be done by health care practitioners only, not patients.
    • Please report only laboratory-confirmed Covid-19 cases.
    • Cases should be reported after a minimum of 7 days or until sufficient time has passed to observe the disease course through resolution of acute illness or death.

    Please consider participating, as this will add to our limited knowledge about the intersection of these conditions. 

    Covid-19 Topics on Celiac.com Forums
    Keep up with the conversation or share information about coronavirus (Covid-19) and celiac disease on the Celiac.com Forum:
    Covid-19
    Coronavirus More Susceptible to Celiacs?

    Covid-19 Resources
    Center for Disease Control
    UK Health Advice on Social Distancing

    This is a developing story. Please share any information in our comments below, or on our forums above.

    Edited by Scott Adams



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    Recommended Comments

    AuntieE

    And if they find out celiacs don't tend to have good outcomes, they won't even bother ventilating us. I hope no one co operates with this. 

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    Scott Adams

    I don't think that is the point of this study. Did you know celiacs, even younger ones, should be getting regular pneumococcal vaccinations? 

    Knowledge is power, and the more they know about how this affects us, the better they will be able to treat us. The more we know the better, whether the information good or bad news.

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    AuntieE

    The Guidelines’ Primary Goal: Saving the Most Lives
    The primary goal of the Guidelines is to save the most lives in an influenza pandemic 
    where there are a limited number of available ventilators. To accomplish this goal, patients for 
    whom ventilator therapy would most likely be lifesaving are prioritized. The Guidelines define 
    survival by examining a patient’s short-term likelihood of surviving the acute medical episode 
    and not by focusing on whether the patient may survive a given illness or disease in the long-
    term (e.g., years after the pandemic). Patients with the highest probability of mortality without
    medical intervention, along with patients with the smallest probability of mortality with medical 
    intervention, have the lowest level of access to ventilator therapy. Thus, patients who are most 
    likely to survive without the ventilator, together with patients who will most likely survive with
    ventilator therapy, increase the overall number of survivors. 
     

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    AuntieE

    If this study proves Celiac patients have slightly worse outcomes they will move down the priority list for very scarce ventilators.

    If they don't collect the information they won't be able to deprioratize celiac patients.

    I'm an ugly old woman, but there are children who might be denied ventilation because of celiac disease if they can prove worse outcome.

     

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    Scott Adams

    You can imagine all sorts of scenarios that are scary, but that does not mean they will come true.  Also, we currently just don't know how we will fare, better or worse, so it is a good think to know, just like it is better to know that you have celiac disease than not knowing it. Since this area is for article comments, I recommend you go to our topic on this in our forum to have a discussion:

     

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    Guest Stacey

    Posted

    I myself thinking more on the positive side, that they are trying to see if we celiacs are Less of a risk, because we are not eating the major culprit “wheat” that we know damages EVERYONES gut lining. We all know that 80% of our immune system is in the gut.  Think about the higher risk ones that are dying from this covid, its mainly the old ( many years of intestinal damage) obese, type 2 diabetics ( which, no one inherits, that is a lifestyle choice) or they have multiple health issues ( we know celiac has over 300 symptoms so yes, most of us have other issues too)   We as celiacs do not consume glyphosate poisoned wheat, whereas everyone else eats the  standard American diet does! 
    I’m under the care of Dr Fasano at Mass Gen Celiac Center in Boston & was diagnosed 10 years ago, as each year goes by, my health has gotten better! More so within the past 3 years. why? Because It wasn’t just wheat. I no longer eat any gluten-free processed foods, no Grains what so ever, no dairy, soy or sugar. I discovered I had many food intolerances, because of the undiagnosed celiac for 25 plus years.   once I addressed them I reversed all my issues ( ADD plus, I had 2 other co existing auto immune, RA & Sjogren’s). Had a repeat endoscopy last year & have healed my villi to the point of “no active celiac) plus bloodwork showing no celiac. We as celiacs tend to eat more healthy so are they looking at that, whereas the avg person eats wheat almost everyday... Is  their unhealthy “Diet” contributing to being more susceptible to getting this virus? 

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    Scott Adams

    For the average person who doesn't have celiac disease or gluten sensitivity eating wheat daily should not affect their health. I would not view our diet as healthier for everyone because it doesn't include wheat, it's just healthier for us because we have an autoimmune condition.

    I think we definitely agree in this thread that untreated, non gluten-free celiacs would likely have a worse outcome when getting any virus, let alone this coronavirus.

    Keep in mind that this novel virus, to which humans have no natural immunity, attacks the lungs. It causes problems with breathing and in the worst cases leads to pneumonia. I too hope that there is some bright side where those with celiac disease are better equipped to handle it, but that remains to be seen. I do think it is important to study this so that we know for sure, because this coronavirus isn't going away, and until there is a vaccine everyone will need to be concerned about it.

    I did see a study published in China that said that those with type O blood seem to have less severe cases, and those with type A blood more serious cases. It will be interesting to see how other health factors will affect those who get COVID-19.

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  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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